Wednesday, July 27, 2011

We got a call from my GI doctor with partial results from the testing that was done while I was inpatient a few weeks ago.

1. The biopsies of my intestines were normal.
2. The h pylori test was negative.
3. Within my stomach there were just a few cells that might indicate allergy or reflux.
4. Within my esophagus there was more cells that might indicate allergy or reflux.
5. The impedence probe test is complete but she is still working out the percentages. Just looking at the numbers if there is reflux it doesn't look like much.

So now what? Her two recommendations were to introduce Flovent and Prevacid. Since I am already taking Flovent for my asthma symptoms it looks like I will need to start up on Prevacid. Then 4-6 months from now I will probably need a follow up endoscopy to see if the medication is helping. She is also going to send out some information on a no-milk diet. Although I have a significant allergy to milk, every now and again I will have teeny tiny itty bitty amounts of food that contain milk. To be on the safe side, Dr O'Gorman wants my parents to cut all milk out of my diet. So not any real bad news but another medication to add to the list.

To celebrate the long weekend, my parents got a few hours of alone time while I was at Grandma and Papa's house. They hopped on the motorcycle, stopped off for breakfast and than headed south to ride the Alpine Loop. It was a beautiful day but just as Mommy started snapping pictures the camera died so sorry - you won't be able to see just how beautiful!

In the afternoon, Mommy came to pick me up and then together we picked up Grandma Marilyn and then met Aunt Kristin, Jackson and Uncle Lonnie in Cottonwood Heights for the annual Butlerville Days parade. It was super hot and humid but as soon as the parade started up Jackson and I forgot all about the heat and concentrated on the candy being thrown out to the crowd. We had a nice little stash before long!

Several different floats had kids with water guns. With my hearing aids and trach - water guns are a wee bit dangerous to me. Mommy wasn't sure if it was better to try to cover me up and draw attention to ourselves or just hope they didn't aim for me because I am so small. She decided to go for protection but that seemed to be the wrong decision as several kids aimed right at me. Hmm.... Jackson and I were both a little unhappy about the water guns so we tried to hide behind Uncle Lonnie when we saw others coming. At the end of the parade, a fire truck would stop periodically and turn on the water and allow kids to run through if they wanted. That was no big deal because people could choose to get wet. The very last part of the parade, though, was a water truck. It was hosing everyone and everything down as it headed down the street. Everyone in our group moved as far away as we could to avoid the spray but all of our stuff got soaked! I'm sure it seemed like a good idea at the time.....

Despite the water, Jackson and I are totally excited about going back next year!

Sunday, July 24, 2011

Ever since Uncle Jeff went to Park City last fall he has been asking my parents to bring me up the mountain to check out the Park City Resort in the summer. With mid 90 degree temps in the valley, it seemed like a great day to go up where it would be about 10 degrees cooler.

The resort opened at 10 am and when we arrived at 10:30 it was almost deserted. There is so much to do - zip line, alpine slide, trampoline jump, minature golf, roller coaster, rock climbing wall and two kiddie rides - that we first had to decide where to begin. Although I wanted to go right to the carousel my parents told me I had to go all the way up the ski tram and down the alpine slide to get to the carousel that was just a few feet away. Hmmm... Anyway against my wishes, I hopped on the tram with Daddy, Mommy and Uncle Jeff and started heading up the mountain. Apparently the tram is like the speed of light during the winter but in the 85 degree heat it was barely crawling. It gave us plenty of time to work on our tans and check out the gophers, chipmunks, zip line, roller coaster and alpine slide from above. A few times I got a little antsy and was more than ready to get off when we reached the top. Although Daddy and Uncle Jeff were ready to fly down the alpine slide, all of us went down the slow lane. Since I can't ride alone yet, Uncle Jeff and I went down first. After whining for the first few seconds I was having a blast and asked him to go faster! Mommy followed behind us and I was there to greet her at the bottom. After she got off she was able to get a quick photo of Daddy as he made his way to the bottom.

We had a quick drink and then I headed to the carousel. Uncle Jeff took me on that as well and Daddy and Mommy were both a little anxious as it became apparent this was the fastest carousel in the world. They had a little fun watching other newbies hop on and parents be more than a little surprised when it took off! Lots of comments of "this is really fast" floated by.

After my carousel ride, my parents weren't sure if I would go on the airplane ride or not. I haven't ever really been on any rides before and this one I would have to go by myself. I was a little nervous but four other little kids got on with me so that made me feel a little better. Once I got my plane off the ground I was hooked and couldn't wait to get on a second time! By that point everyone was melting and ready to leave and I had a little freak out when I discovered two was going to be my limit for the day. It was a great test though and my parents think a trip to Lagoon is in order later this summer when it cools down.

On the way out Mommy got distracted by the Rocky Mountain Chocolate Factory so we had to stop in for a treat. Mommy got a frozen banana (they were out of root beer for her root beer float), Uncle Jeff got a cake batter ice cream cone, Daddy got rocky road candy and I got a gigantic neopolitan lollipop. I had a few good licks but it didn't take long before my eyes got heavy and I fell asleep half way down the mountain.

Since Grandma and Papa Smith were out of town for most of the 4th of July holiday, we got together tonight for the 24th of July holiday (for those not in Utah that is a State holiday called Pioneer Day). With the recent change in the fireworks laws in Utah, it is a free for all for pretty much the entire month of July and so fireworks were on the agenda. I had gotten a long late afternoon nap to be able to stay awake for them.

After eating dinner out on the patio, we needed some cooling down so Grandma pulled out the water guns and just about everyone got wet. I was even used as a human shield by a few folks (apparently it is bad form to shoot a water gun at a child with a hole in her airway - hee hee).

We dried off in the late evening sun and then I got to experience sparklers for the first time. I thought they were great and called it my "magic wand". As soon as it got dark enough we let off some fireworks and as aerials are now allowed in Utah we got quite a show from a few of the ones we had purchased as well as others in the neighborhood. It was pretty late but well worth it!

After a week of not seeing my cousin Jackson, I was super excited to go to his house tonight to play. On the way over when Mommy asked who I loved best of all I was honest - Jackson!

Jackson was just as excited to see me but when two 3 year old's come together there is still lots of arguing and fighting - lots of threats from our mommies that if we don't start getting along we will have to be seperated!

Wednesday, July 20, 2011

What do I hate worse than camping (and man do I hate camping) - marathon craniofacial appointments of course! Okay so they aren't completely terrible but any time you combine a 3 year old with 4 hours of hurry up and wait during prime nap time it is bound to be good times for all involved.

Craniofacial panel at Primary Children's differs slightly from what we experienced at UC Davis and Lucile Packard. We were given a paper at check in detailing each of the six areas that would be represented and the provider that day for that area. of the six areas we ended up only really seeing four - plastic surgery, ENT, orthodontics and speech. While we waited about 90 minutes to get in for the first appointment we met up with some blog friends who also had their panel appointment at the same time - so fun!

First up was plastics with Dr Morales. Since we had only seen Dr Morales a few weeks earlier it was a sense of deja vu about what the plan will be for Peyton's future surgeries. First up will be a surgery to release the ankylosed joints. Once released, then Peyton will need to use a TheraBite (or something similar) to exercise the released joints to prevent them from ankylosing again. The hope is that once the joints are released then there will be enough room to be able to complete a pharyngeal flap surgery to modify her palate. By the time all that is done it will probably be time for another jaw distraction. We will see him aagin for follow up to the distraction in December but the joint surgery will probably be a year out. And with that timeline all hope of getting a trach out by the age of five went out the window! Actually, we'll be lucky if all the surgeries are completed within 2-3 years. Just because Dr Morales is Dr Morales he had the resident look into Peyton's mouth at her palate and shared somewhat flippantly how difficult the palate surgery was going to be. Although I fully trust in his skill set, who really wants to hear that your child's case is complex, difficult or challenging? Just for once it would be nice to hear that Peyton is a typical or easy case but I won't hold my breath ; ) While we were meeting with Dr Morales, he asked Peyton's age and instead of hearing almost 4 for some reason he heard 4 1/2. When he repeated that back Peyton must have liked what she heard because in every other appointment (or when talking to random strangers in the elevator) she told them she was 4 1/2. I let her know not to believe everything Dr Morales tells her - hee hee!

Back to the waiting room we went and just before Peyton was ready to have a melt down over wanting to ride in the car we got called back to orthodontics/dentistry with Dr Yamashiro. We presented Peyton's panoramic xrays from a few weeks back and he proceeded to share lots more good news! First off, the xrays appear to show cysts potentially developing - wonderful! In addition she is considered high risk to have pathological fractures of the few teeth she has remaining - awesome! The xrays also showed pretty clearly that are problem with fused baby teeth will also follow her into adulthood as some of the same permanent teeth are fused as well - cool! Finally, when I asked about when Peyton will be old enough to have implants to hopefully restore her adult mouth to a more normal appearance he shared the great news that it probably won't be until closer to 18 - great! Yes, Peyton will get to go through most of her teenage years with truly awful looking teeth. Unfortunately, distracted jaw bone is not nearly as developed as what will be needed as a foundation for implants. Therefore, she will probably need to have the bone built up ahead of time and we can't do any of that until we are pretty much done with all the jaw distractions she will need. Okay so I know I sound a wee bit bitter but after the first appointment with Dr Morales to hear nothing but bad news throughout the next appointment was just lovely.

And back to the waiting room we went with that information floating around in my head. Then it was time to meet with Helene the Speech Therapist. Since Peyton is already being followed by Courtney for Speech and Feeding, it was more of a catch up session on what has happened over the last year so no big bombshells thank goodness!

Back to the waiting room we went once again. Since I hadn't eaten all day and it was now nearing 4 pm I was more than a little grumpy and was having difficulty remembering small details like dates, names of procedures and such when trying to update all the different folks we had been cycling through. It was with relief that we were called back to meet with Dr Smith the ENT. Although Dr Muntz was the ENT who performed Peyton's bronchoscopy on Friday, he was not the ENT covering the panel today. I tried to catch him up quickly on her more recent history. He threw in the comment, "Distractions are really effective - except for children with Nager. It doesn't seem to work so well for them." Super! I was wanting to get an idea of the timeline to implant Peyton's bone conduction hearing aids so he suggested that I make an appointment with Dr Muntz a few months out to determine next steps for that - most likely it will require a CT scan to determine if the thickness of her skull is where it needs to be. If not, we will need to wait until she is older. I asked if Peyton would be safe to do any pool time while she was capped but as I suspected the cap does not completely seal off the stoma so swimming is off the agenda at least for the forseeable future. I mentioned that we would need to be finding an audiologist soon now that Peyton won't be attending USDB and getting regular hearing tests and Dr Smith jumped all over that and ordered us to go up to the hearing lab on the 4th floor and get that taken care of. Most of the time I would have been really appreciative to get it out of the way and not have to come back but as my blood sugar was dropping my patience was wearing thin. But up to the 4th floor we went and after a brief wait Peyton and I headed to the sound booth. For the first time, I actually sat with the audologist in the control booth while Peyton sat with the tester in another room. Peyton could see me through the window and despite the marathon afternoon she was perky and happy to go along with the test. The only problem we kept running in to was that she wanted to spend more time talking to the tester about her birthday party then she did wanting to listen!

We had been asked to bring the results back to the clinic so we ended up back where we had started. Although we had yet to talk to the nurse or the social worker they took pity on me and let us head home - 4+ hours after we started.

It has taken me a couple of days to digest all the information. I think I am over the initial shell shock but now the reality of all that awaits Peyton in the next several years (and that's just what we already know about!) is sobering. Since the hope for a decannulation is moving even further from our reach I am struggling again with the disappointment of not meeting the goals that I had set to try to have the majority of her surgeries completed and for her to be trach free by kindergarten. It's not going to happen. I remember when she was an infant and someone mentioned a trach removal probably by kindergarten and I thought that seemed like forever away and we are just about a year out and counting - it is just so unbelievable to me! Just as I have done in the past I will try to take this in stride and keep pushing on. I think the marathon of the craniofacial panel is really just a metaphor for Peyton's medical journey. We really are just in the first few miles but although the finish line is not yet in sight it really is out there somewhere on the horizon - I have to trust in that.

And on that hopeful note a video of Peyton and her new stupid trach trick - Letterman here we come!

Sunday, July 17, 2011

At 6 am on the dot I woke up, shook Mommy and pointed out the window to the brightening sky - it was morning! Mommy was pretty groggy but admitted she had told me once it was light out that it meant it was morning and we would be able to go home soon. I was in a great mood but getting pretty antsy. Mommy had me watch some videos while she went down to the cafeteria to get some breakfast and coffee. When she got back I had a little time to play with my pool again. About 9 am, Mommy got permission for her and I to walk around the halls together and eventually I spotted a wagon and decided I needed one too. Unfortuntely, it didn't belong to the infant unit but we got permission to go up to the fourth floor and get a car. I was in heaven and spent the next 90 minutes going up and down halls as fast as I could. There were a few close calls with the doctor's making rounds and a few pieces of medical equipment but eventually we got the notice that the orders were signed and we could leave! Before heading out the door, though, the nurse had to remove the tape from my face and pull the tube out of my stomach - yuck! It only took a few seconds and then I was able to get dressed and get all my stuff together to head to the car. I waved at everyone on the way out and Mommy let me stop to throw some more money in the fountain. As she got me into my car seat I told her, "I had a great time at the hospital" but when Mommy asked if I wanted to stay another night I responded with a firm no!

We grabbed some lunch on the way home and I got a few minutes to play before both Mommy and I took at nap. In the evening we stopped by Grandma and Papa Smith's to drop off the car they had let Daddy borrow and then on to the dealership to pick up Daddy's car. Then we went to dinner at Mimi's. I had tons of fun coloring before heading home for a bath and bed.

Mommy just loves surprising me! She woke me up at 6 am to head in to Primary Children's for some tests. On Wednesday, she got a call from the scheduler that they had a cancellation today and hoped we could take the appointment. So last night Mommy turned off my feeding at midnight and switched me to Pedialyte until she woke me up. I got dressed still half asleep and then gave Daddy some kisses before we got into the car. I was in no mood for tests and I cried a little on the way in. When we arrived, Mommy let me throw some money in the fountain which brightened my mood.

When we made it to the presurgery area I had about 20 minutes to play before they called me name, but as soon as they brought me back to be weighed I knew exactly where I was and refused to get on the scale. Eventually I stopped crying long enough to get a height and weight (28 lbs 1 oz) and then was led back to the exam room. Once again, I knew I was in for some trouble when I saw the standard issue PJ's waiting on the table. As nurses came in to update Mommy and get my blood pressure (147/76), temp and O2 saturations I was pretty upset so Mommy talked them into letting me wait to put on the PJ's until after I got the Versed. A few minutes later they returned with the meds and I pushed them in. Immeadiately they had me go to the second waiting area but warned Mommy to hold on to me since the Versed would take it's toll quickly. With all our past experience with it, Mommy figured she had a few minutes but it was only seconds before I got all wobbily which meant she had to carry me to the play area and keep me sitting up to play despite my insistence that I could walk around on my own. At one point Mommy had me sitting on the floor and had one arm around my waist, as she went to reach for a toy I fell face first into the carpet - the Versed is good stuff!

A few minutes later the anesthesiologist came by and let Mommy know that since I am rumored to be such a fighter in the post op area that he was going to try a different medicine that will allow me to wake up slower and calmer - Mommy was on board with that! He told Mommy to put me in the wagon with the toys I was using and he would lead us back to the OR. When we arrived in the hall and Mommy tried to take my hearing aids I threw a fit so he had Mommy follow him into the restricted area and had her wait right outside the OR door while he hooked me up to the anesthesia. Once I started to drift off, he brought the hearing aids out to Mommy and she found her way back to the waiting area.

She had about 40 minutes to relax before Dr OGorman (GI) and Dr Muntz (ENT) arrived. They brought her into the consultation area to discuss the findings. Dr Muntz performed the laryngoscopy and bronchoscopy. Although my airway looks great (no granulation tissue or granulomas) my airway is still pretty small and too risky for decannulation in case I had more surgeries and needed to be intubated. Mommy was not entirely surprised but the discussion was to look at it again in a year or when most of the surgeries were completed.
Dr OGorman shared some photos of my internal organs and verified that although my button balloon was awfully close to the duodenum there were no signs it was creating any blockage. She did say that when she did the endoscopy, placed the ph probe and got the biopsies there was signs of esophagitis (inflammation of the esophagus) but until the probe test and biopsies came back the cause was not known - it could be reflux but it could also be allergies. Even if it was reflux, it wasn't too bad. With that, Mommy had a few minutes to take it all in before she was called back to post op.

The nurse caring for me has cared for me in post op before and remembered what a fighter I was. But with the new drug the anesthesiologist gave me, she and the nurse had plenty of time to talk because instead of taking me just a few minutes to wake up they sat together for almost 90 minutes! When it came time to move me to my room I still wasn't awake! While waiting in post op they had some discussions about where to put me and settled on the infant unit. Although the infant unit is traditionally for children up to age 2, due to staffing that is where I ended up. On the drive up I started to wake a little but fell back asleep before reaching the room and stayed asleep for another hour or so until Uncle Jason arrived for a visit. Mommy was grateful for the iced coffee and bagel but didn't have much time to enjoy it before I woke up and was pretty ticked. In post op they had placed "no no's" on my arms to keep me from pulling out the ph probe but once I was awake enough to understand, Mommy told me she would take them off if I promised to leave the probe where it was. I agreed and off they came. Just as Uncle Jason was leaving, Grandma and Papa Smith came by to check on me too. I was supposed to have a chest xray to verify the placement of the probe before eating but I had already gone 6 hours without anything in my stomach so Dr OGorman overrode her orders to allow me a feeding before heading down. With a little in my tummy, the four of us and the nurse headed down to the radiology department. Just like always I freaked out and needed several techs to hold me down to get the xrays but I stopped sobbing as soon as it was over to make sure I put in my request for a sticker - which I got. Rather then riding in the crib on the way up, Mommy carried me and instead of putting me back in the crib when we arrived at the room, Mommy let me sit in the rocking chair and watch Caillou on her phone.

After a while, Grandma and Papa Smith headed home and Mommy and I got some time to relax a little. Mommy had to learn how to work the machine attached to the probe and Child Life brought me a craft project, toys and some books to help keep me entertained. Mommy and I had just finished up the craft project when Aunt Kristin showed up with a cool Barbie pool toy. Mommy helped put it together and at first I played with it without any water. After Aunt Kristin left, though, Mommy let me put a few cups of water in to really try it out. Around 6:30 Daddy stopped by after work. He and Mommy headed down to the cafeteria to get some dinner while I stayed and played with the nurse who I was already fast friends with. When they came back I had some more time to play with Daddy and then we put in the Toy Story vhs tape. Daddy headed home to my furry brothers while Mommy stayed with me. When Mommy broke the news we had to stay the night I demanded to go home. She told me that she had to stay the night at the hospital and could I stay with her to keep her company and I reluctantly agreed. The nurse changed out the crib to a big girl bed so Mommy and I could sleep together. We finished most of Toy Story and then read a few books. I finally fell asleep around 11:00. But sleep was not on Mommy's agenda. She had decided to use my feeding pump from home which the nurse didn't no how to use and she also had to keep hitting buttons on the machine attached to the probe. Since I was going to be getting alternating feedings of formula and apple juice every four hours - Mommy didn't get much sleep. In addition, at 4 am then nurse tried to flush my IV and I bolted awake pissed off. At that point I had been tolerating all my feeds so Mommy held me down while the nurse removed the IV. But I was wide awake now so Mommy popped in the Little Mermaid and I fell asleep about 20 minutes in. Mommy fell back to sleep with me one last time.

Thursday, July 14, 2011

I have a favorite dolly (who I refuse to name) and the other day I got to buy her a new outfit. It came with shoes, a dress and a headband. When I went to hang up my hearing aids at the end of the night, I took my dolly's headband and told my parents I was hanging up her "hearing aids" too.

Yes, Uncle Jeff and I are wearing parrot glasses and a parrot hat. I saw them at the store and absolutely had to have them. Mommy shouldn't be surprised, I own more glasses, hats, shoes and purses than she does and I'm not ever four yet!

Julz and Mommy met in 1995 at First Health. Although they have lived hours away from each other for about a decade and talking on the phone doesn't happen as much as they would like, they still consider each other "besties". And because they are, Mommy feels no guilt in totally stealing these photos from Julz and Joe's blog!

Mommy took some vacation hours and spent some time with Julz and her new husband, Joe when they came to Salt Lake for a concert. They had to stop by Training Table for lunch and then Mommy came to pick me up and I entertained the newlyweds for several hours while they all caught up. I have been changing my mind over the last few days on what type of a birthday party theme I want and then Julz showed me all her fun dolphin jewelry and now I am sure that is what I want!

Wednesday, July 6, 2011

In prep for my craniofacial appointment on 7/18, Dr Morales asked that I get a panoramic xray done. Now if you have followed my blog you know that getting traditional xrays has been an awful experience for many years. The last xrays in the spring for my shoulder and my jaw took an hour and resulted in emotional scarring. Add to that my past hypersensitivity with anything to do with my mouth and Mommy was a little nervous.

It was only a few minutes after we signed in that the tech brought us back to the xray room. Although I have been to the dental office at Primary Children's multiple times, I had never been in the xray room and was a little hesitant. Once Mommy explained that there were "no hands" (I wasn't going to be held down) I cheerfully responded with "OK" and was happy to go along. The tech got me on a chair and covered me with the xray gown (that is usually enough to set me off but I was fine) and then I had to get my chin positioned on top of the metal, my head between two arms and I had to put a small piece of plastic in my mouth. And then I had to sit completely still for about 30 seconds as the xray film rotated around my head. Mommy stood on the other side so I could see her and encouraged me to sit perfectly still and once it was done I demanded a sticker and we headed back to the waiting room for the film to process. While we waited the tech brought me a sticker and a ball for being so good. I was content to play for a few minutes but the tech came back and said I had "wiggled" just a little so we had to do it again. Before Mommy had time to cringe, I shouted "yeah!" and went running back to the room to do it again. So back on the chair I hopped and Mommy encouraged me to do like we do with the Yo Gabba Gabba songs and "hold still" and "freeze". I was happy to play along and within a few minutes it was all over and back to the waiting room we went. The receptionist was so taken with me she asked Mommy if it would be okay to send me down to the cafeteria for a complimentary ice cream treat but Mommy broke the news that I have a severe milk allergy. A few minutes later, the tech came back out with the film to take to the appointment next week and you can see it above. Let's just say I will need a lot of orthodontia work in the future which is not unusual for children with Nager Syndrome!

Mommy and Grandma Glenda were very impressed with me and how well the appointment went. I have really grown up in the last year and with the exception of the traditional xrays I like going to my doctor's appointments now.

4th of July dawned bright and early in our household as I was awake by 5:30 am! That's okay because we had plans to head up to Brighton Ski Resort for their annual pancake breakfast and parade. With it heating up in the valley it was nice to head up where it was much cooler - and there was still a little snow on the ground!

Jackson, me, Mommy, Aunt Kristin and Uncle Lonnie met Grandma and Grandpa Mower for the pancake breakfast at 8 am. Apparently veterans of this event realize that 8 am is way too early and wait until closer to 10 am to eat their breakfast. Because we had several hours before the parade would start, Jackson, Uncle Lonnie, Mommy and I went on a hike around the lake. We spotted elk tracks and saw a few chipmunks. Uncle Lonnie scared me when he said he saw a snake in the water and I made Mommy carry me the rest of the way. As the time drew close for the parade, we set up our chairs along the route and threw pop it's and Uncle Lonnie fired a cap gun. (Neither Jackson or I liked that at all).

There was a World War II veteran in the parade and that got Mommy, Grandpa and Grandma to crying. I wasn't sure what all the fuss was about but I blew him kisses as he drove by. As the parade came to an end, the only way out was to drive on the parade route and several people threw candy into the open windows of the car - cool! Jackson and I have decided that we are going to get lots of candy next year and be in the parade!

After a long nap, Daddy and Mommy and I went out to eat and as it got dark we camped out at the Sandy Ampitheater to watch the fireworks going off across the valley. Since the laws changed to allow aerials it was quite the show since everyone seemed to have bought them this year! I was interested for about five minutes and then I just wanted to play with Daddy's binoculars. There was a small miscommunication about the location so I never met up with Jackson, Uncle Lonnie, Aunt Kristin and Grandma and Grandpa as planned but we'll make sure to work it out for next year.

I was home around 10:45 but it took me until after midnight to fall asleep - what a day!